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Immunologist

Messages
84
Hi everyone

I've managed to get an appointment to see an immunologist, and the appointment is on Tuesday. Just wondering if any of you have got any advice on things I should ask to be tested and/or things I should bring up?

I'm not holding out much hope as there isn't any treatment in the UK for ME but hoping that if the immunologist digs deeper there might be something she can help with.

Thanks
K
 
Messages
15,786
Just wondering if any of you have got any advice on things I should ask to be tested and/or things I should bring up?
IL-8 is one that often turns up high in ME patients, if you're interested in having some verification of abnormality, even though it doesn't really specify the cause of the problem. Being post-exertional might help in getting a high result.
 

SOC

Senior Member
Messages
7,849
Low CD-8+ cell number is also found more commonly in PWME than the general population. You might want to have her check Th-17 cytonkines -- IL-17, IL-23, maybe others.
 

Raindrop

Senior Member
Messages
129
Location
USA
Most Immunologists don't "get it", but worth going anyway. I am not sure what your
specific goals for the apt are. However, I would definitely have the doctor run the
IGg, IgA, IgE,IgM Immunoglobulin panel. She did this for me after year and years of very abnormal
HIGH iGg and a very serious problem was found. A very very high score, as well as
very lows (mine had both), can reflect other diseases.
 
Messages
84
Thanks for everyone's replies

@Valentijn could you clarify what IL-8 is testing?

@SOC I've had some immunophenotyping done as was tested for T-LGL but that was negative. The report says CD4:CD8=2.7 does that mean anything to you?

@Raindrop I will definitely ask for those-my GP is clueless and has referred me as I have constantly abnormal blood work. I know that there's not much immunologists will to to help PWME Personally I think I need to see a virologist but hoping they might find something that could be treated.

For everyone- I have heard some people taking about taking medicine that regulates the immune system (eg immunoglobulins) Is this worth asking about?
 
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Misfit Toy

Senior Member
Messages
4,178
Location
USA
I had lymphocyte testing and found out I have idiopathic lymphopenia. It took 2 immunologists to give me that diagnosis. I don't make WBC. Also, Ema may have mentioned, but for CVID. Or, the subclasses of igg, iga, igm. They are really important.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I would start with a regular old CBC with differential, IgG (total and subclasses), IgA and IgM.

You could also get a Lymphocyte Proliferation Panel and a NK cell function test as well.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Also this is interesting from Mayo Labs:

The absolute counts of lymphocyte subsets are known to be influenced by a variety of biological factors, including hormones, the environment, and temperature.

The studies on diurnal (circadian) variation in lymphocyte counts have demonstrated progressive increase in CD4 T-cell count throughout the day, while CD8 T cells and CD19+ B cells increase between 8:30 a.m. and noon, with no change between noon and afternoon.

Natural killer (NK) cell counts, on the other hand, are constant throughout the day.(3)

Circadian variations in circulating T-cell counts have been shown to be negatively correlated with plasma cortisol concentration.(4-6) In fact, cortisol and catecholamine concentrations control distribution and, therefore, numbers of naive versus effector CD4 and CD8 T cells.(4)

It is generally accepted that lower CD4 T-cell counts are seen in the morning compared with the evening (7), and during summer compared to winter.(8)

These data, therefore, indicate that timing and consistency in timing of blood collection is critical when serially monitoring patients for lymphocyte subsets.

http://www.mayomedicallaboratories.com/test-catalog/Overview/60593
 

SOC

Senior Member
Messages
7,849
@Valentijn could you clarify what IL-8 is testing?
Not Valentijn, but since I had the info on the immune test results I was looking at to answer your next question, I figured I might as well chime in. :D According to my results paper:
IL-8 is one of the major mediators of the inflammatory response as a chemoattractant. Primary function is the induction of chemotaxis in its target cells.

@SOC I've had some immunophenotyping done as was tested for T-LGL but that was negative. The report says CD4:CD8=2.7 does that mean anything to you?
As far as I can tell, there's quite a variety in what's considered a normal CD4/CD8 ratio. Mostly it's measured because of concern about low CD4 in HIV, so they're more concerned about low ratio due to low CD4 and don't pay much attention to high ratios. This source says
A normal CD4/CD8 ratio is 2.0, with CD4 lymphocytes equal to or greater than 400/mm3 and CD8 lymphocytes equal to 200 to 800/mm3.
A ratio like CD4/CD8 is only meaningful if you know something about the individual components. For example, your CD4/CD8 is a little high. That could be because your CD4 is high, or your CD8 is low, or both. You could also have a very low CD8 with a normal CD4/CD8 if your CD4 was also low. Confusing, isn't it? The medical community got into reporting the ratio because it's important in HIV where it is known that CD4 cells are being destroyed and it is "known"(assumed) that CD8 numbers are normal. It's not so useful for the rest of us.

My CD4 numbers are normal, but my CD8 is low. My CD4/CD8 ratio is 4.8. It has been as high as 6.3.

For everyone- I have heard some people taking about taking medicine that regulates the immune system (eg immunoglobulins) Is this worth asking about?
Medications and supplements that regulate the immune system do so in a number of different ways. Until you know what is wrong with your immune system, you won't know what medications or supplements would be appropriate or safe for your condition. There's little point in asking an immunologist for meds until s/he has detected an abnormality for which a particular med is appropriate.
 
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ukxmrv

Senior Member
Messages
4,413
Location
London
Most of the tests mentioned here are not available to UK NHS patients and even private Immunologists may not be using a lab that offers these tests sadly. I've had some correspondence with my PCT in London that covered testing through the hospitals here. It's not good.

@Katyw, are you seeing a private or NHS immunologist and do you know if they have any experience in CFS and ME?
 
Messages
84
@Ema thanks-I will definitely ask what you've suggested

@SOC thanks do much for all that info- very helpful.

@ukxmrv yes, sadly I thought that might be the case! It is an immunologist on the NHS, and I don't know if they have any experience in ME, I didn't get much choice in my referral! My blood work has shown a constant chronic infection for over 10 months now (GP thinks viral) so he's referred me. I think I need to see a virologist. I'm hoping then can at least look further into things.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Katyw, there are some interested NHS immunologists out there but it is a postcode lottery. Hope you get to see one of the good guys. They may run some tests to see if you have a virus infection that they recognise. There are some who will go a little further as well. Please let us know how you get on.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Most Immunologists don't "get it", but worth going anyway. I am not sure what your
specific goals for the apt are. However, I would definitely have the doctor run the
IGg, IgA, IgE,IgM Immunoglobulin panel. She did this for me after year and years of very abnormal
HIGH iGg and a very serious problem was found. A very very high score, as well as
very lows (mine had both), can reflect other diseases.


yes they are on e different plain alas often - you could get them to look into any allergies you may have ..hives, asthma excema etc...and food intolerances.
You could ask about POTS but it is not really their area - MCAD is though so you could ask about that too if you have any itching etc
GOod luck

ALlh